Okay well most of you all probably know I’m not a parent by now but I was wondering if any of you could help. I’m not sure if many of you have children in the infant ages or school ages so I’m not sure if many of you have experience in this department but I’ll give it a try: nHere’s the story, my younger sister Erica is 8 and has CPKU aswell. Lately I’ve noticed she has been very emotional, if you bump into her she’ll cry and say you hurt her and if things aren’t done exactly how she wants it she’ll throw huge fits. Also her teacher at school has said Erica gets easily distracted from her schoolwork and doesn’t pay attention at all, but in both kindergarten and 1st grade she never had these problems. Well her last level came back as like around 19mg/dl and since our levels are supposed to be between 2-6mg/dl that isn’t good at all. Plus it isn’t just this level her last 2 were also in the teen’s or twenty’s.
No matter what me or my mom (and my dad, although he isn’t really as good with the diet as me and my mom) tell her or do she won’t listen. We’ll tell her not to have more fries or something like little debbie snack cakes because she’s had to many phes for the day but the minute we leave the room she’ll eat it. Also she’ll eat 4 or 5 pillsbury cookies without even thinking. She won’t drink her formula unless we stand in the kitchen for almost 1/2 hour and make sure she does, and I know I had an issue with my formula but I don’t think it was this bad.
Anyway, I was wondering if anyone had any ideas on how to help my little sister out. nThanks Breanna
Being restricted on a low protein diet is really hard at times like you know. If your sister is taking phenex 2 I certainly don’t blame her not taking it as I really got so sick on this formula! nMaybe experiment with the formulas and get her on the low volumn formula as she might do much better with this since the formula is the most important part of the PKU lifestyle as I like to call it!
I think we learn as we live. Your sister is eating foods or having too many of the phes eventually she will know that this way of living isn’t ideal. All that you and your mother can do is to keep working with her and never giving up even though she is driving you both crazy! nGive her information about PKU but try not to sound bossy or demanding as she will listen to you by actually talking to her about PKU.
I certain wish you and all of your family a great christmas and a happy new year!!!
I’m still a new mom but here are my thoughts…
It could be a phase she’s going through…being defiante (not listening). Easton has definately gone through some stages . Right now we’re in the “give me what I want or I’ll scream bloody murder” stage. I’ve noticed too that when his levels get out of whack he gets crabby. nYou’re a good big sister for looking out for her. Keep doing what your doing.
Sarah (aka Easton’s Mommy)
Debbie, yes we have asked her if she wants to try new formulas although she didn’t really seem like she wanted to. But in the end she agreed that when we go back to the doctor in like 3 months she’ll try some (we couldn’t get in any earlier). It kind of seems like she just doesn’t want to stop what she’s doing to drink her milk, which I can totally understand because even today it annoys me to have to stop what I’m doing to drink my formula (I can’t really drink my formula with meals because otherwise I get stomach aches).
Sarah, lol I went thru a “I’ll scream bloody murder” phase when I was younger, and I can tell you it will pass. Also since I went thru a phase like my sister is going thru I’m pretty sure it will pass but I was just getting alittle worried, as was my mother, because we have noticed some changes in her since her levels went up. Also even today when my levels aren’t where they need to be I get alittle crabby aswell. nThanks for the help, and happy holidays to you guys! nBreanna
Breanna just keep on doing what you are doing I certainly wished that I had a caring big sister like you. My sisters are younger than me. There are times that I really needed a big sister even though I love my sisters and brother. nWe all go through stages of not listening and sometimes the best way to learn is to go through life experiences ourselves as I did this when I was seventeen and went off diet which was the worst decision even though the medical professionals suggested this as they were taking everybody off diet about thirty years ago.
I experienced every off diet symptoms imaginable being off diet and if I have too much phe some of the symptoms happens even though I drink my formula.
I have learn’t probably the hard way which has made me a strong person.
Well we should be doing blood levels soon so we’ll find out soon if anything changed or not.
I know this is giong to sound wierd, but if you can’t find her at home, look under table or in a closet. When I was her age I would steal non-PKu food and run under a table or into a closet and eat it. My levels got to be around 18. It had to do with seeing all the kids I knew eating doughnuts and cake and I wanted that. Check to see if she’s doing that.